Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day".
Sponsored By: Representative Tonko
Introduced
Summary
This bill would designate April 5, 2025 as "Barth Syndrome Awareness Day" to raise public attention for a rare, life‑threatening genetic disorder. It notes that Barth syndrome is caused by mutations in the TAFAZZIN gene, mainly affects males, often leads to heart and skeletal muscle problems, low neutrophil counts, growth delays, and high childhood mortality, and that roughly 300 people worldwide and fewer than 150 in the United States are diagnosed; the resolution also highlights that no FDA‑approved treatment exists, only one U.S. interdisciplinary clinic specializes in care, and that improving awareness, earlier diagnosis, research, new treatments, and regulatory pathways for ultrarare diseases is critical.
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Bill Overview
No Economic Impacts Identified for this Bill
Sponsors & CoSponsors
Sponsor
Tonko
NY • D
Cosponsors
Bilirakis
FL • R
Sponsored 3/10/2025
Matsui
CA • D
Sponsored 3/10/2025
Norman
SC • R
Sponsored 3/10/2025
Trahan
MA • D
Sponsored 3/10/2025
Wilson (SC)
SC • R
Sponsored 3/10/2025
Auchincloss
MA • D
Sponsored 3/10/2025
McGarvey
KY • D
Sponsored 3/18/2025
Davids (KS)
KS • D
Sponsored 3/18/2025
Biggs (SC)
SC • R
Sponsored 3/18/2025
McGuire
VA • R
Sponsored 3/31/2025
Flood
NE • R
Sponsored 4/1/2025
Latimer
NY • D
Sponsored 4/2/2025
Guest
MS • R
Sponsored 4/8/2025
Neguse
CO • D
Sponsored 9/16/2025
Roll Call Votes
No roll call votes available for this bill.
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